Hepatitis Forums
Hepatitis C Main Forums => Living with Hepatitis C => Topic started by: UsagiYojimbo9 on July 24, 2015, 08:23:45 am
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My son was born with Hepatitis C. He is 9 yrs old. We are going to our next annual check up in August.
It is so frustrating trying to find useful information out there. I found one Canadian research document that basically suggested he adhere to a healthy diet and exercise.
I understand checking his viral load is important, but is there nothing we can do to strengthen his health? When can we start treatment? When should we start treatment?
Where is the information on treating children afflicted with Hep C that are NOT coinfected or are not afflicted with another disease?
Any advise would help, feel like there is a vacuum of information and assistance out there and I am trying my hardest to treat and protect him. I'm even thinking I should take better care of my own liver in case he eventually needs a transplant.
Concerned Father.
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Hello UsagiYojimbo9,
Welcome to the forums. There are currently studies being conducted by Gilead. This particular study has just recently been started and it lists all locations and are still recruiting. See CONTACTS AND LOCATIONS
https://clinicaltrials.gov/ct2/show/NCT02249182?term=Sofosbuvir+Australia&rank=11
If I find more information I will certainly post it.
Brad
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Yes- there is much information and a lot of it can be confusing. If it were me- I would look into tx soon.A liver friendly diet is helpful too. You can continue to check the clinical trials.gov page.
https://clinicaltrials.gov/ct2/results?term=children+hepatitis+c&pg=2
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Thank you for your replies. I'm assuming as with any clinical trial there is a possibility he will be randomly assigned to a control group who will be treated with a placebo? I looked at the clinical trials posted in these replies, and I intend to follow up with our next visit on August 7th. The only other GI doc we met with suggested that we wait to treat until he is older.
MrCAT211, what do you mean by a liver friendly diet? I've found some books on a liver friendly diet, but they seemed to be panned by nutritionists as bunk. I've taken to starting my day with lemon water each morning.
Thank you for taking the time to reply.
Concerned father.
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I've also read that artichokes, beets and cranberry juice are useful for liver health. At one point I read about milk thistle, but there is no consensus on how best to administer milk thistle. In fact the same books that support milk thistle also carefully describe the dangers. The GI also said it was bunk. I'm assuming less fat and less junk food, but this is true of any 9 year old boy.
Concerned father
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I'm assuming as with any clinical trial there is a possibility he will be randomly assigned to a control group who will be treated with a placebo?
Welcome to the forums, UsagiYojimbo9! Regarding clinical trials, not all clinical trials have multiple arms with some participants getting a placebo. Some clinical trials (like the one I just completed, and which I believe has cured me) are open label single-group trials. In other words, all 100 Canadian participants in my trial were given the real drugs for the full duration. You can find out what the parameters are on any trial listed on clinicaltrials.gov. It will tell you if there are placebos being used and randomized arms, etc.
Furthermore, most trials that involve one group getting a placebo or a sub-optimal treatment duration (e.g., 8 weeks instead of 12) will give any of those participants the real drug for the full duration after the trial is over. That is the usual policy. But once again, that is something you can find out in advance - whether that trial is operating by that policy.
I don't think there are many trials that would accept a 9-year-old child. But there may be some that are specifically looking for children in order to develop treatment options.
best of luck,
kim
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UsagiYojimbo9
I can only speak from personal experience. Most of the things I have read with in books or online seen to work well for some and not so well for others.
So- I have done a lot of trail and error on myself, tying to figure out what actually helps and what hasn't. I wasn't ready to go down the treatment road until now since the new treatments have become available, and I am waiting now to see if my insurance will decline me- as they do many folks.
However, I can tell you what I have been doing for the past 6 years or so. I really started trying things because my levels were going up and I started having actual liver pain among many other symptoms.
So here is what works for me:
No meat, no dairy, no gluten- ONLY Organic (everything).....Don't freak out....there are still things available to eat!
I eat beans, lentils, eggs and nuts for protein.
I eat a lot of raw fruits and veggies, cooked potato, kale, spinach, cabbage, squash, artichokes.
I eat a lot of salad cosseting of many lettuces, spinach etc.
I quit salt as much as possible.
Also quit tap water, only bottled water Nestle brand and add lemon.
I consume n some way shape or form daily 1/2 olive oil and about 1/2 cop coconut oil.
I snack on almonds or almond peanut butter and bananas.
They have almond yogurt now too, so I mix that with cereal add blueberries.
Organicville makes great salad dressings free of gluten, Nature's Path makes great cereals that fit into this diet also.
Almond milk comes in many brands now.
Odwalla Mango Protein drinks, and "green" Odwalla drinks.
Organic fresh Beet juice (which I hate), cherry and blueberry juice.
I shop at Whole Foods, Trader Joe's and Sprouts mostly.
Thats about it- that is what I have narrowed it down to as far as my liver diet, and remember this is over many years of trial and error.
For supplements here is what I take:
High potency B
1000iu Vit E
NAC
SAM-E
A basic organic multi Vit
500 C
liquid Milk Thistle extract, liquid Dandelion root extract
I know that when I have not done this regimen in the past- or if I go off of it which I rarely do now- my symptoms and liver seem worse.
Urine becomes darker, pain is stronger, I itch more a lll over, I bruise more easily, and I am way more tired. If I stay on this plan my symptoms seem better. I wouldn't suggest
doing it all at once but maybe start adding and deleting things in your diet gradually.
My husband and kids have kind of merged their "unhealthy" with my "healthy" diet also(none of them have HCV) They too have noticed differences in how they feel, their skin being clearer, not being as tired etc.
Any other questions I would be glad to help!
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UsagiYojimbo9,
I would try to get your son treated with Harvoni. For 12 weeks. Best of luck, I hope he gets cured. And Harvoni has excellent cure rates.
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It is such a relief to be able to discuss these matters. I appreciate the diet info. I guess the trick is to convince a 9 year old to like lentils instead of Five Guys. He seems willing to try new foods, but if he doesn't like it he drinks milk right away with a mouth full of food. He loves milk too.
Another hoop to jump through is to test his 7 yr old brother. He has refused a blood test. My wife was successfully treated before she had him, so I suspect he is okay. Even if we test him, current protocols preclude treating him. I figured if our household adopts parameters as a whole anyway, what possible advantage is there to testing him at this point? Other than to possibly establish a pre-existing condition?
We recently moved and our Pediatrician put in our son's medical report for his new school that he is Hep C positive. We are trying to make sure it is kept as confidential as possible (school nurse only.)
Almond butter looks hopeful.
BTW, the richest known source of Vitamin B is Marmite, an Australian spread that I have grown accustomed to slathering on our home made bread in the morning.
Luckily our family loves Beets.
I am curious about more detailed info on milk thistle. I understand the theory is it catalyzes regeneration of the liver, but in and of itself, it can be toxic.
Thank you all for taking the time to respond!
Concerned Father
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UsagiYojimbo9,
Your son is lucky to have you looking out for him, and trying to find out what is best. Diet etc. will help, but it is a very powerful virus that ideally should be eradicated, as soon as possible. The progression of the disease seems to be impossible to predict - that is, a person can seem okay one year and be very ill the next. Can you get your son treated with Harvoni?
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I can't make any useful comment on anything save the Marmite.
It's English. Vegemite is Australian.
Someone from the US once asked me if Vegemite had a use by date, because frankly how would you be able to tell it had gone off?
Also, check the sodium to see it's not terribly high in sodium.
;)
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We have an appointment with a GI on August 7 and will explore Harvoni. The good news is he is genotype 2a/2c, which has a very high cure rate as compared to other genotypes.
I am the only one in the family that enjoys Marmite, but the sodium risk is duly noted.
Previous GI Docs have told me that observing his condition is important because of its erratic nature, but in general children born with show a more stable viral load. Can anyone confirm this? In other words, being born with it is different than being infected with it.
Concerned Father
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I'm 29, and was born with Hep C.
With the exception of a mild flare up when i was 13, i displayed few symptoms until I was 18.
It's very helpful to know ahead of time, to keep stress off the liver. There are a handful of RXs that i was given as a kid as alternatives because their more common substitutes impacted the liver.
I attempted two trials before the age of 20. One of which i did not qualify for because i was not 18, the second was a peg/riba trial that i did not participate in due to the inclusion of a placebo.
The TXs nowadays are incredible, and hopefully the pediatric results reflect those of TX Naive F0/F1s.
I ate terribly unhealthy, as most teenagers do. I also consumed around 2 liters of soda per day. All with minimal effect at the time.
When i turned 19, my viral load shot up, and slowly grew to 3mil by the time i was 21.
For the last few years I've been on a liver friendly diet which only has two universal parts to it: Salt minimal and Low fat/sugars.
Everything else is really a conversation with the doc, your doc'll be able to tell you the best kinds of foods he'll need. You don't need to shop at Jimbo's/WholeFoods/Spouts/Whatever priced up healthy food store, you just need to get him into the habit of checking labels for sodium, fat, sugar and protein.
Most of the health stuff from consumer friendly liver diet books are garbage.
Milk thistle is not allowed with newer treatments, and i never saw a difference in liver function from milk thistle. I took it for a year, compared blood test results before Milk Thistle, during, and afterward and there was no statistically significant difference. (I've had near monthly blood tests since i was 17)
One of my Exs is a professional Chef and nutritionist for a Gym.
This is what i took from her:
Lemon-water, heated with some honey.
Garlic and Onions to be cut ten minutes prior to use in a dish.
Apples.
Cruciferous vegetables like broccoli.
Spinach, Beets and Avocado.
This^ did improve my liver function tests along with minimizing fast food.
There is no evidence to support the claim that children have a more stable load.
There isn't even anecdotal evidence to support the claim.
Observation is critical.
When i was in middleschool and highschool i was treated differently by teachers who knew, some knew, others didn't.
IF you're in the US, you can choose what you want to disclose to the school for any and all health concerns. Your doc has no right to disclose any information you do not want to share.
A school nurse usually has no reason legal requirement to confidentiality within the school/district. The school/district may pull him from Physical Education and/or team sports in the future. My parents took a preemptive approach, Pulling me out because i could over-stress my body rather than 'bleeding risk to others' in doing so it allowed me to set the terms for what activities i could/n't do.
The trial that is open to pediatrics looks like a ten day trial on Harvoni. I would check with his doc to see if taking the trial will disqualify him from future Harvoni trials, or if it could be an issue when attempting treatment in the future.
You can always appeal denials, but it makes the process take months longer if it works.
if you can get some of the potential trial infos you're looking at over to your doc prior to your appt, s/he may be able to give you better answers.
Also, Vitamin D is very important, with the nature of depression in Hep C, a Vitamin D deficiency can be very hard on anyone let alone a preteen/teenager.
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Where is it written that Milk Thistle is proscribed during modern treatments? This not about whether it works or not; just about it being proscribed during treatment. Ive never read/heard that. Looking for a credible source.
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So, my son's viral load went from 3 million to 12 million. He is genotype 2a.
Good news is that it seems we can be included in a Gilead trial with Sovaldi.
We have to move quickly, though.
Anyone out there know anything about Sovaldi?
Concerned Father
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Sovaldi (also called sofosbuvir) is one of the two medicines that make up Harvoni. It was already much used before it was coupled with ledipasvir to produce Harvoni, so it has a record of being effective.
I am very glad your son can be included in a Gilead trial, especially since his viral load has climbed so much. I suspect one thing preventing him from receiving treatment earlier was that there hadn't been clinical tests on people as young as your son.
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Well, the genotype 1 candidates filled up the study quickly. The fact that my son is genotype 2 was to our advantage; there are four slots left, so we will move quickly to be the next one.
I saw only Sovaldi, but I will have further discussions soon.
Concerned Father
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I think you are moving in the right direction if you can get your son into a clinical trial involving Sovaldi. I would imagine, since he is Geno 2, that it would involve 12 weeks of Sovaldi+ribavirin?
Some questions to ask the people running the trial:
1. Is everyone getting the real drug(s) for the full duration? Or will there be a placebo group or a shorter duration group for comparison?
2. If your son ends up in a placebo group of the trial and is not cured, will he then be given the full course of treatment, and for free, at the end of the trial so that he can be cured? (This is standard policy for most trials, but it's a good idea to check.)
I got my drugs through a clinical trial, and I believe I am cured, but won't have confirmation until late October.
Best of luck!
kim
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If it is the trial I think it is, I was just reading about it online. And it looks to me like all participants will receive the real drugs for the full duration, which is the best trial you can find. Everyone going into it has a very high chance of being cured.
I hope your son gets a seat in it! That would be ideal.
Best of luck,
kim
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Fingers crossed, my son has been invited to participate in the clinical trials. We are awaiting the next step.
In terms of advocacy, I am wondering how we can meet with a Pediatrician that will consider only the interests of my son's health. I am sure the clinicians holding the trials are great people, but I feel like someone knowledgeable should be considering my son's interest during the trials.
then, I thought to visit the local hospital in case we're faced with complications far away from where the clinical trials are being held.
I've asked to chat with the parents of an older child who successfully completed the clinical trials. This is on hold.
Am I missing anything?
Concerned Dad.
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Congratulations, Concerned Dad, on your son being invited to participate in the clinical trial! That seems like a very positive step forward. :)
I don't have any suggestions to your question about consulting a pediatrician who will function as your son's advocate. But I understand your concern. I hope someone else here might have a suggestion on that.
Best,
kim :)
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Thank you, Kim.
FYI, there is no placebo group in this trial. Because of his age and he is genotype 2a, he is a viable candidate.
Concerned Dad
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Thank you, Kim.
FYI, there is no placebo group in this trial. Because of his age and he is genotype 2a, he is a viable candidate.
Wonderful! The "no placebo" trials are the best. that way you know your son will be getting the real medication for the full duration.
kim
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So sorry you & your son are facing this .You both are in my thoughts & prayers for a smooth treatment & many years of quality life. I found that the first few days were not fun getting used to the drug & then smooth sailing. Please tell your son we are here for him!
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My son was also born with hep c and is 8 now. He is type 1a and is taking part in the Harvoni trial. At his screening, his load was 242,000. After 48 hours on the medication, he was at 28 and at two weeks is at none detected. So far, we've seen zero side effects. The trial (at least for 1a) is 12 weeks. I sure hope your results are as good as ours!
As for the doctor question, our trial is run by the hospital GI department and the hepatitis specialists, so we don't do anything with his pediatrician during this aside from telling her the good news!
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My son was also born with hep c and is 8 now. He is type 1a and is taking part in the Harvoni trial. At his screening, his load was 242,000. After 48 hours on the medication, he was at 28 and at two weeks is at none detected. So far, we've seen zero side effects. The trial (at least for 1a) is 12 weeks. I sure hope your results are as good as ours!
As for the doctor question, our trial is run by the hospital GI department and the hepatitis specialists, so we don't do anything with his pediatrician during this aside from telling her the good news!
Fantastic news about your young son and his results with the clinical trial he is on, dhardawa! Thanks for sharing. :)
kim
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dhardawa, thank you for letting us know Harvoni is working well for your young son. Children are often the last to benefit from medical advances because a smaller percentage of them need to be treated, so I'm very glad this trial will help make Harvoni available to children.
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We are starting our Day 1 trial this Wednesday, October 14th. Everything is on hold until we can measure to what extent the side effects will interfere with this activities, field trips and school work. Harvoni is a combination of Ledipasvir and Sofosbuvir. Because Genotype 1 is more resistance, it's often treated with this combination. My son will be getting Ribavarin and Sofosbuvir. There are many reasons to be thankful. I've just finished reading THE PATIENT'S PLAYBOOK by Leslie D. Michelson, a book I heard of on NPR. It describes how to navigate the world of health in the US when facing a serious condition. I've done several of the steps, but he advocates getting more than one opinion and having access to more than on specialist. Thanks for updating us on your son. It's great to hear some hopeful progress.
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Hey Usagi,welcome to a good place to be,this site helped me tons and still does,looks like alot of good feedback already. Faith is here and of course there too. I worked with folks with disabilities for 25 years and I must truthfully say any Dr. In the field that I worked in never had anything bad to say about milk thistle. Of course the folks I worked with we're on many different kinds of MEDS and the milk thistle was given to protect or help thier livers and the ages varied from adolescence to adult. I take it and have been for years once I started working in the field because as fellow workers and I liked to stop at the local taverns after work and then the next day we would kid about how "" Boy We sure BRUISED OUR Livers last night"! Which for me and some other co workers ended up with that feeling of a BRUSIED liver for real in life from all our drinking and for some they have now passed from just that " Bad Bad BRUSIED livers,actually that's what got me to go to a dr. Awhile back,,a pain in the right side which was verified Bad liver. Well enough out of me. ,your son is in my prayers starting Now. "Just Willie g" GatorFalls
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First day went well. Second day, still no visible symptoms. Great staff at Johns Hopkins.
We go back tomorrow for Day 3 blood draw.
Concerned Dad
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Great to get started. Try not to worry ..those are some great Drs.
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Hey usagi i just got done with a one on one with my Longhaired friend and sandals and i mean that sincerely just praying for yas and really thanking my friend for all his help he has given me and also for the goodness he is doing for your child and your family. They are good drs.! Look whose guiding them. " just willie g" GatorFalls F A I T H
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We got our Day 7 results. My son's viral load went from 10 million down to 260. Yes, that's correct: two hundred and sixty. There have been no visible side effects. He continues to attend Tae Kwon Do, tackle his homework and bully his little brother with no sign of lost energy or mood swings. Even though we are rejoicing, we are aware that the real concern is a possible relapse after treatment. Last day of treatment is January 6. Then there is a 24 week follow up. Meanwhile, my son is showing great courage with the blood draws. It is a very hopeful prognosis.
Concerned Dad.
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Wow, what great progress! With all the current treatments, relapses are very rare. Your son's liver is already beginning to rebuild.
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Good day.
As of November, my son's lab results show no trace of the Hep C virus in his blood. He gave blood last week for the December tests, which we will get the results next week. The treatment will continue until January 6 to avoid any chance of relapse, but as of now he is tentatively considered cured.
I am amazed at the series of coincidences that have led us to this moment. After we insisted he get tested, the results and options left us questioning the wisdom of getting tested. At 7 yrs old, the results meant he now had a pre-existing condition that we couldn't treat for 11 years and most likely would result in stigma with his peers and friends. Plus, it complicated any changing to a new job and any chance of losing our medical insurance.
I met a Gastroenterologist on a flight back from doing work in Haiti. He pointed me towards Johns Hopkins. My new job put me within driving distance. Thanks to quick action on our part, my son arrived at the right time with the right genotype to get included in the clinical trial.
Our next step is to convince his younger brother to get tested. He is still afraid of needles, and I don't blame him (his arm is so tiny.)
Dad Still a Bit Concerned, But Cautiously Optimistic
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UsagiYojumbo9, thank you for posting the great news about your older son. As for your younger son, you mentioned earlier that your wife was cured of Hep C before she had him, so perhaps you can wait until he needs a blood test for some other reason, then have blood drawn for a Hep C viral load at the same time, so there is only one needle stick for both. Also, if the phlebotomist uses a butterfly needle, it hardly hurts at all.
Gnatty
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I believe the initial blood test is on a much simpler level. They just measure the enzyme levels in his blood. If there is reason for alarm, they graduate to measuring RNA levels, antibodies, etc. So, the amount of blood is not so much. At this point, we would just confirm we have no reason to be concerned.
Concerned Dad
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I was thinking that since he is so afraid of needles, it would be ideal if they get the VL out of the way rather than doing just enzyme levels, then another needle stick for antibodies (which if positive still doesn't prove active disease), then a third needle stick for the VL. Of course, it's possible that insurance might not be willing to pay for a VL unless the other tests have already been done.
Something to keep in mind: normal enzyme levels don't necessarily mean no HCV. Enzyme levels don't necessarily rise before a person has had HCV for many years.
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Thanks for the detailed and very informative response.
When my boys were born, we were told the antibodies would be flushed out after 18 months to two years. So, if there are no antibodies, they should be okay at this point. This is why we held off getting them tested at birth or soon after.
Concerned Dad
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Lovely to read your post about the series of meetings, events and decisions that have led to your son getting a significant result from his last blood tests. Bravo. I was also advised not to have my son tested for the first 18 months of his life, and then put off having him tested until he needed a blood test for some other reason. I was also advised to consider not having him tested as, if he was positive, I would need to inform the school, and that this may lead to stigmatising actions by the school. This was misinformation - there was then and there is now no imperative (in Australia) to inform the school. Rather, we modelled, practised and reinforced safe blood related practices. I spoke with a Hep C specialist midwife yesterday who told me that the baby is only at risk of HCV infection if he or she is nicked in the process of birthing. That is, with a normal vaginal birth, with no forceps or scalp electrodes, it is extremely extremely unlikely that the baby will get a scratch. My son still hasn't needed a blood test but as I go into treatment and have had lengthier conversations with him about that, he has decided, at age 18, to get tested next week. I'm wishing you well with the follow up tests and with your younger son UsagiYojimbo9. I wonder if and how you can get the health record at your son's school altered so that the diagnosis doesn't follow him? Would that be a concern where you are?
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Gnatcatcher, one more thing I forgot to mention; when our eldest son got his blood test at 7 yrs old, I was surprised how inexperienced the phlebotomists were in getting blood from kids. In fact, several of the Nurses refused to even try to do it, explaining their lack of experience dealing with kids. The Nurse at Johns Hopkins has been taking blood samples from kids for 9 years. That, and the fact my youngest feels comfortable there, was the first impetus to get it done there. I certainly will discuss in greater detail what exactly it is we are trying to achieve with Johns Hopkins before the appointment happens.
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Hazel Australia,
Thank you so much for the detailed response. Thanks to you, I think we will pursue expunging his school record. I imagine we can get a letter from the Hospital once he is cured and have them destroy the medical records. We can then replace them with updated records from his new Pediatrician.
Concerned Dad
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Hazel Australia,
We have thankfully not run into any stigma, but we became very concerned when we moved to this new community. Our Pediatrician in NH provided medical records for our new school and included his designation. We emailed with the Nurse and luckily she has respected his confidentiality so far. We, however, became very concerned about his bloody noses and scrapes and scratches, especially if he was sleeping over a friend's house. Most people don't observe protocols when it comes to boys having scrapes. We certainly have learned to do so, placing gloves in every first aid kit we have access to.
Concerned Dad
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My 9 yrd old son has completed his treatment. His last three blood labs have been unable to locate the virus. We have to continue testing for the next six months, but there seems to be a consensus he is in the clear; esp since he is genotype 2.
The other big news is that his 7 yr old brother finally found the courage to provide a blood sample for testing and the results were negative - no virus!
I am giddy to think that the scourge of this affliction has finally left our family.
Thank you to all in this forum who have been so responsive, supportive and informative.
Best,
Concerned Father
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Your whole family free -- TERRIFIC news!
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I can't tell you how happy I am to hear your news UsagiYojimbo9,
Happy New Year!
Hazel